11th International Conference on AIDS: Activist Perspective

A note from TheBody.com: The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

As the lights of the massive basketball arena dimmed, the crowd grew hushed
with anticipation. All alone in the darkness, Dorrie Millman, a middle-aged,
white woman in an elegant white pantsuit, crossed to center stage, stood in a
single spotlight and said: "I'm here to officially open the Eleventh
International Conference on AIDS. I know you're probably wondering why I was
chosen to open this international conference. Well, I have AIDS." We listened
intently, still, wary. Her small figure was all alone in a sea of darkness,
with her face magnified on two huge video screens on either side of the
massive stage. "People always ask me how I, a grandmother from North
Vancouver, British Columbia, could have gotten AIDS." The entire auditorium,
15,000 of us, held our breath and braced for her next words. "I tell them it
really doesn't matter." The crowd went wild.

Vancouver welcomed attendees with an open heart. A huge number of beaming
volunteers of all ages, ethnic backgrounds and sizes, seemed to be eagerly
awaiting a question or request for directions. Most people donated their
vacations to help with the conference.

I was staying in a University of British Columbia dormitory. For three days
preceding the conference, a "Community Forum" was held in the same dorm. It
was a giant networking/skills building mini-conference for over a thousand
people with AIDS ("PWAs") from around the world. It offered opportunities to
exchange ideas and to draft recommendations on various topics, including
access to healthcare, human rights, funding, research, treatment activism and
more. The dorm bubbled with intense conversations, disputes and shared humor
-- living there was like being in the midst of a huge, HIV-positive United
Nations.

Basic Logistics

Every morning began with a plenary session in GM Place, a giant basketball
arena, and included at least four presentations by researchers, each of which
was fascinating, and a debate on a topic of interest. One morning the debate
was whether drug legalization would limit or increase HIV's spread; another
topic discussed was whether money should be spent on extensive HIV testing in
developing countries.

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The plenary sessions ended about 11:00, and most people headed next door to
another, much larger, basketball arena called BC Place. In the center of the
arena floor were the commercial booths of drug companies, testing companies,
international AIDS organizations (Centers for Disease Control, United
Nations, USAID), book publishers, condom vendors and so forth. Most
pharmaceutical booths were the size of small houses. One had a second floor
coffee bar, and two had small theaters. The Durex condom booth ("Official
Condom") had two guys dressed in six-foot condom suits, and a slot machine
you could play, with American quarters, to try to line up three of the same
type of condoms (all funds went to Canadian AIDS organizations). All booths
had a wide variety of pens, markers, bags and stickers to give away. One of
my friends called this "Pharmacyland."

We had great fun at the Abbott booth, where they had a tasting bar for
flavored Advera. We pretended we were wine tasters and tried to identify the
various flavors, with comments such as, "I like the texture, it's sort of
like chocolate syrup laced with hair oil." The staff informed us it was the
de-natured sardine oil, and they offered free recipe books. Along the edges
of the arena were booths from community-based organizations, including
several from religious AIDS organizations, a large number of international
HIV organizations (Swaziland AIDS Support Organization, Pink
Triangle/Malaysia, Israel AIDS Task Force), three ACT UP booths, and my
favorite, the sex workers.

The Network of International Sex Workers

This booth was staffed by commercial sex workers, both men and women, most
of them from Vancouver. They talked about what was legal and illegal
regarding public sex, explained the mission of the Network of International
Sex Workers, had great stickers ("Support Your Local Sex Worker" and "Your
Pleasure Is My Business"), and even had a great list of places to eat cheaply
in Vancouver. They also attended research presentations about sex workers.
They heard, for example, that the Burmese Health Minister had been invited to
present research regarding HIV prevention, and they were "pissed." Several
years ago, the Burmese government told twenty sex workers with AIDS that
small pills were the cure, then gave them fatal doses of cyanide. All of them
died. The Burmese Health Minister was the man who had authorized the cyanide.
They decided to attend his presentation and alerted the International Caucus
of Women and the Global Network of People with AIDS to come along as well.
When the Health Minister heard they were coming, he didn't show up.

Wake Up Canada!
We Need A Strategy, Not A Tragedy

The Canadians are facing a crisis in their AIDS funding. All money for care,
prevention and research is to end in 18 months, and currently, their
government is not talking about what will happen when the funds run out.
Canadian PWAs, researchers, doctors and social workers formed a broad-based
coalition (named "Wake Up Canada!") to pressure the government to action.
Just before the conference, the prime minister Jean Chretien announced he had
an important fishing vacation that would prevent him from opening the
International Conference. The Canadians were seething. Feeling that the
government turned its back on them, they asked all of us conference attendees
to stand up and turn our backs when David Dingwall, the Canadian Health
Minister spoke during the opening ceremony. "Canada has turned it's back on
us, now we'll turn our back on Canada" read the flyers.

Tension grew as the opening ceremony proceeded. Scheduled to speak last, Mr.
Dingwall was a nervous wreck. PWAs packed the first twenty rows in front of
the stage. As Mr. Dingwall was introduced, they rose, stood on their chairs,
turned their backs on him, and started to boo. At the same time, over half
the audience silently stood up and also turned their backs. This pressure
caused the Canadian government to announce that discussions regarding funding
renewal would start in September. It also prompted Mr. Dingwall to schedule
meetings with Wake Up Canada! and several PWA advocacy groups that week.

Later that week, Mr. Dingwall got the flu and left early. During the closing
ceremony, a PWA in a wheelchair, representing Wake Up Canada!, presented a
representative of the Conference with a huge bouquet of flowers for the
Health Minister from Canadian PWAs because "we know how it feels to be under
the weather and hope he feels better soon." They also gave a large bottle of
sunscreen to the Prime Minister, since "we suspect he is suffering from
sunstroke."

The Cure?

As the conference began, one of the big issues was: had the cure been found,
and if so, what were the implications? While it seemed that the media really
wanted to have big "CURE" headlines, most people with HIV, doctors and
activists had a "wait-and-see" attitude. Many feel cautiously optimistic
about the protease inhibitors; they want to know how long the drugs will be
effective, and they realize some people won't be able to take them at all.

The Downside Of Too Much Optimism

There was concern about the consequences of hope taken out of context. Would
governments cut back on prevention funding and plan to give drugs to
HIV-infected people in the future? Would individuals ignore safer sex,
figuring they could just take "the cure?" These were some of the topics
discussed in conference hallways.

Access To Drugs

Costing an average of $10,000, protease inhibitors are out of reach of most
people with HIV, in developed countries (like the U.S.), without health
insurance or Medicaid. For the developing countries of Africa, Asia, South
and Central America it is much worse. In many countries, people with HIV
can't get drugs other than aspirin. There is no Bactrim to prevent
Pneumocystis Carinii Pneumonia (PCP), no treatment for anything else, and
getting Cytomegalo Virus (CMV) simply means blindness.

It was very unsettling to listen to researchers talking about exciting new
drugs, and to realize the person sitting next to you would never get them.
For years, people with HIV have been trying to get researchers to study
holistic medicine, since it is the only option for many people with HIV in
the poorer countries of the world (and the preference of lots of others). For
the first time, researchers started talking about studying holistic medicine:
"After all, they'll never afford protease inhibitors in some countries, so
maybe we should look at what they are already taking that seems to be
working." During the closing ceremony, the main organizer for next year's
conference suggested that drugs that are no longer useful for people in
developed countries should be given to the developing countries. The PWA
speaking after him, who came from Indonesia, immediately told him that she
was offended that he would even suggest such a thing.

Throughout the conference, feelings about drug pricing ran high, evoking
numerous protests. ACT UP's Eric Sawyer called on governments and
pharmaceutical companies to work together to make these drugs available to
people unable to buy them. The Brazilian delegation lead a protest past the
commercial exhibits (most of which were pharmaceutical companies), chanting
"Lower the price." Throughout the conference, ACT UP awarded "Golden Urns" to
"those organizations, researchers, governments or pharmaceutical companies
that have done the most to kill people with AIDS." For those pharmaceutical
companies who earned a Golden Urn because of the price of their drugs,
hundreds of stickers were plastered on their booths that read "AIDS
Profiteer" and "Greed = Death." Serrano was awarded a Golden Urn for the
price of Human Growth Hormone and Abbott got one for the price of Norvir,
their protease inhibitor.

Other Golden Urn Awardees

The American Medical Association got a Golden Urn for endorsing mandatory
testing of pregnant women, and Hoffman LaRoche got one for their refusal to
run pediatric clinical trials of either protease inhibitors or oral
gancyclovir.

Addressing Access to Drugs

Jairo Pedraza, the North American representative for the Global Network of
People Living with AIDS, ("GNP+") organized a panel discussion on giving the
developing world access to these drugs. His panel included: Patsy Fleming, US
AIDS Czar; Gordon Nary, head of the International Association of Physicians
in AIDS Care; Dorothy Burke from the World Health Organization; Major
Rubaramira Ruranga (Ugandan representative to GNP+); and Suzana Murni
Spiritia (Indonesian representative to GNP+).

Gordon Nary began a dialogue about increasing drug access to get something
done. He announced that his organization would fund a full-time staff member
just to work on drug-access in developing countries, then he turned to
Patricia Fleming and said, "Patsy, not to put you on the spot, and
remembering that we are being recorded, I'd like to call for Vice President
Gore to convene a meeting of the pharmaceutical companies to discuss drug
donations and action steps." Shortly thereafter, Peter Young, representing
Glaze-Wellcome (one of only three drug companies that chose to send
representatives), said the White House could "save the stamp," that Glaze was
willing to work with the Vice President to find some solutions to get drugs
into Asia, Africa and South America.

The Next Conference

The next International Conference on AIDS will be in Geneva, Switzerland in
1998, and rumors are already swirling. Usually, the International AIDS
Society (IAS) licenses a group to stage the conference, but since it will be
in their home city, the IAS will stage it directly. One of the things that
makes the International Conference on AIDS unique is that people with AIDS
attend and are involved in planning each conference. The IAS is also
concerned with how "touchy-feely" the conference has gotten, and would like
to limit presentations to only medical science, eliminating presentations
regarding prevention, education, outreach, and most social sciences. Pressure
is also building to have the following conference (2000) in Africa, though
some people feel there are few cities in Africa which have the capacity to
house 20,000 people.

Body Positive will be attending the Twelfth International Conference in
Geneva. Start saving now, we hope to see you there!

Glossary

Developed world: Industrialized countries, like the U.S. and western Europe.

Developing world: Agricultural countries, like those found in Africa, Asia,
South and Central America.

Karin Timour is a consultant and the former director of education at Body
Positive, Inc.

A note from TheBody.com: The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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